12 replies to this topic

[pogirl1786]

hey all~ i've been gluten free for six months, and everything has been getting much better for my health. while i'm thrilled with all my improvements, i'm still having one problem. whenever i get a stomach ache, i freak out. my doctor told me that having stomach aches would be normal because sometimes it takes a year for you small intestine to fully recover, so i know that i shouldn't worry. however, i think after about seventeen years of having to worry over stomach problems, the anxiety has become a habbit. so basically, i will be doing fine, and then my stomach will start to hurt, and i'll start getting nervous, which makes it worse. it becomes a cycle for me. does anyone else have this problem? what helps ya'll deal with this? any responses are appreciated.

[tarnalberry]

Please don't take this suggestion the wrong way; I mean it very seriously:

I would see if you could talk to a pyschologist. You've got a conditioned response set up, and that sort of thing can be tough to break. It's pyschological, in the sense that your brain has made a strong, causal connection between the two - but that doesn't make it any less of a physical problem or any less of a real problem. A psychologist is trained in dealing with these sorts of problems, and can help you figure out what the best way for YOU to overcome the conditioning is. It's different for each person, because a lot of it rests on the exact causes for the anxiety in the first place. (I don't just mean the stomach ache, but what having a stomach ache means to you in your life.)

[plantime]

I agree with Tiffany. You have developed a conditioned response, and sometimes it takes professional help to break the cycle.

[Donna F]

I have the same problem. I also agree that it's phychological. Though it's a pain in the butt ( or stomach, rather) to have to do this, I have found that if I retreat to the bedroom and REALLY meditate on it, I can "release" the anxiety and stop the symptoms. It takes a good 20-30 minutes or so, but I've gone quite a while now without a problem, so maybe I won't need to do it anymore (?)

BTW, not discouraging you from seeing someone, but if this happens frequently, you might want to give it a try. I can give you more specifics about the type of meditation if you want - just give me a pm.

Hope you're doing better,

donna

[burdee]

I agree with Tiffany and others that an anxious overreaction to stomach pain is definitely 'psychological'. However during my counselling training and experience, I observed and believe that physical illness (esp. pain inducing illness) DOES change people's basic outlook on life. I'm a basically optimistic person with a strong faith that God loves me, will heal me and sustain me through anything, including the excruciating pain I experience with gluten 'slips'. HOWEVER, when I have been gluten free (and therefore pain free) for a while and have a 'slip', the pain brings back all my memories of years of chronic pain, fear and confusion.

When I finally told a doctor (7 years ago) about my chronic painful symptoms (I feared my bad eating habits caused the pain), I was given the worthless 'IBS' diagnosis and advised to eat more whole grain products. DUUHHH! Of course, that IBS diet exacerbated my symptoms for another seven years. I was SOOOOO relieved to finally learn (about 6 weeks ago) that celiac disease caused my pain and a gluten free diet would relieve my recurrent symptoms. During the first week, when the pain went from excruciating to tolerable, I wondered how I would adjust to a 'normal' life without the pain. Of course, my almost weekly gluten slips kept reminding me how bad the pain could be. So I went from gratitude that I finally found the answer to frustration, irritability and hopelessness about ever getting this gluten-free diet thing right. I ALSO experienced fear everytime I accidentally consumed gluten, because I knew I would have to endure more pain before I recovered again. Although the pain wasn't as intense as pre gluten-free diet, having a few pain free hours and then days made me realize how much I HATED being debilitated by intestinal cramping, bloating and pain. (But I also heard from other recovering celiacs how a little recovery makes the 'slips' even more painful.)

However, I must admit my anxiety was mixed with anger that the offending food wasn't clearly labeled, frustration that my husband cross-contaminated my food, guilt that I wasn't careful enough in my food choices and even shame that I continued to damage my body, despite knowing I must avoid gluten. So I believe all those psychological reactions to celiac pain are normal responses to a frustrating, painful situation. However, with our national attitude of 'take a pill for any negative emotions', many people are quick to label any form of anger, sadness or fear as 'psychological' problems, rather than normal reactions to really frustrating, scarey or sad situations.

I have learned to cope with my frustrations and anxiety about celiac pain by:
(1) telling someone close to me (usually my husband) that I hurt and I'm scared and angry about the pain. I also email a couple of close, supportive friends about my 'slips' as well as painfree days. I try to reassure them that I'm not mad at them, but at myself and the situation. I also try to remember that, even though I'm scared that I will NEVER get through the current pain, that 'this too shall pass'.

(2) Doing some gluten sleuthing to recall exactly what caused my reaction. I'm avoiding all the obvious gluten sources, but I've gotten snagged by vitamin pills (which contained starch--in pharmaceuticals that CAN by wheat starch); deli meats (DUUHHH); cheeses sliced and wrapped in a deli (cross-contamination by handlers); sharing food from a gluten containing plate (vegies which didn't touch the breaded meat dish, but probably were contaminated by flour dissolved in juices which touched the vegies); shared condiment containers; and lactose slips (I usually use 'lactaid' supplements but the focus on gluten has made me lax about lactose avoidance). Doing the detective work makes me feel more in control of an 'out of control' situation (my intestinal pain).

(3) Sterilizing the kitchen, by dumping contaminated contents of cannisters, cleaning the cannisters and replacing with safe stuff or even getting rid of 'unsafe foods', is another way I can 'take control' when pain makes me feel scared and out of control.

(4) Finally, doing whatever I know helps relieve the pain while the gluten reaction is passing, includes: drinking hot water, drinking peppermint herbal tea, walking to keep the gas moving, laying on the floor or bed with my knees in my stomach, and above all praying for comfort and healing.

I also want to mention depression, while I'm addressing 'psychological symptoms'. Although severe sadness and hopelessness has been labeled by therapists and the psychiatric community as a 'disease', the word 'depressed' has been overused to the point of meaninglessness lately. Many people use 'depressed' interchangeably with overwhelmed, sadness, hopelessness or even fatigue. I have been diagnosed with SAD (seasonal affective disorder), more commonly understood as depression from lack of light (I live in Seattle, WA). I use full spectrum lights on cloudy days, since SAD symptoms are related to lack of sunlight. However, I also felt hopeless and sad during years of chronic pain from undiagnosed celiac disease. Memory of that chronic pain plus the realization that most doctors know little about and often misdiagnose celiac disease is VERY depressing. So I believe 'depressed' symptoms from struggling with celiac are a very logical reaction to years of pain, trips from doctor to doctor, misdiagnoses which wasted more time and bad advice (like eat more whole grains to treat 'IBS' symptoms).

I hope we can view our negative emotions as normal reactions to years of pain, struggle, confusion and misdiagnoses, rather than a 'disease', so we can focus on healing ourselves by avoiding gluten and recovering from celiac disease.

[tarnalberry]

just to add to what burdee wrote about depression, the media tells us all this stuff about depression and so forth. and how it makes huge changes in your life and you can't work and all the rest. but there's are related conditions - like situational depression (which would be an easy one for a celiac to get in some situations) and dysthymia (which is a mild type of depression that doesn't interfere with living your life but makes it less enjoyable than it could be) - that are often overlooked. my therapist and I both think there's a decent chance I've got dysthymia (not from celiac, specificallly), but I don't have to take meds for it. it sounds off topic, but my point is just not to throw a label on yourself because it's popular and kinda fits. we don't necessarily need a label if we can get to a solution without one.

[Donna F]

Doing the detective work makes me feel more in control of an 'out of control' situation (my intestinal pain).

(3) Sterilizing the kitchen, by dumping contaminated contents of cannisters, cleaning the cannisters and replacing with safe stuff or even getting rid of 'unsafe foods', is another way I can 'take control' when pain makes me feel scared and out of control.
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Hah! That is EXACTLY what I do. It is definately a control thing. I do it when my family and I get sick too.

Works for me!



-donna

[celiac3270]

hey all~ i've been gluten free for six months, and everything has been getting much better for my health. while i'm thrilled with all my improvements, i'm still having one problem. whenever i get a stomach ache, i freak out. my doctor told me that having stomach aches would be normal because sometimes it takes a year for you small intestine to fully recover, so i know that i shouldn't worry. however, i think after about seventeen years of having to worry over stomach problems, the anxiety has become a habbit. so basically, i will be doing fine, and then my stomach will start to hurt, and i'll start getting nervous, which makes it worse. it becomes a cycle for me. does anyone else have this problem? what helps ya'll deal with this? any responses are appreciated.

You have no idea how familar that sounds to me!!!! I have found that I get nervous and stressed when my stomach starts to hurt too....I've been gluten-free for only 19 weeks, and am, also, happy to see the imporvement, but fed up with getting sick.

Please don't take this suggestion the wrong way; I mean it very seriously:

I would see if you could talk to a pyschologist. You've got a conditioned response set up, and that sort of thing can be tough to break. It's pyschological, in the sense that your brain has made a strong, causal connection between the two - but that doesn't make it any less of a physical problem or any less of a real problem. A psychologist is trained in dealing with these sorts of problems, and can help you figure out what the best way for YOU to overcome the conditioning is. It's different for each person, because a lot of it rests on the exact causes for the anxiety in the first place. (I don't just mean the stomach ache, but what having a stomach ache means to you in your life.)

When I was diagnosed, it spread pretty quickly among the faculty...in a private school of a little over 300 kids where the faculty shoot out a zillion e-mails a day to each other everyone knew....and the school counselor literally asked me if I'd come in every Wednesday morning for like...20 min. to talk about it. He made an analogy between celiac disease and a bully for me....the stomach cramps were like a bully in that they scared me and got me nervous and stressed every time they came....I won't go into great detail, but if anyone is extremely interested....send me an e-mail or PM me or something...I don't find it that fascinating anymore...

I was made anxious by the stomach problems because of school...I worried when I'd miss tests, homework assignments, notes, announcements in class...all the imporant stuff. I'm extremely diligent, meticulous, and organized when it comes to school, so I knew that nobody else's notes would be as thorough as my own; knew that they might not remember every assignment....now that I have the summer months to heal and it doesn't matter as much if I'm sick, it's less stressful. However, now if I get sick, I'm more frustrated and emotional...I feel like six years of this has been too long...gosh, I can't imagine putting up with it for 20 or 30 like some have... !

Stress relievers: just try to take the right attitude: if you start to feel sick, there's nothing you can do about it, so there's no point in worrying...it'll run its course, but you'll feel better after. Good luck with your symptoms!

-celiac3270

[midnightlullaby]

I've had stomach problems for a few years now. At first it was just uncomfortable and painful and then my symptoms became worse. A year a half ago I was rushed to the ER thinking I was choking but it was a reflux episode which caused a panic attack (at work!). What a trip! When I got to the hospital they said I had strep throat and sent me home. Later when I went to the doctor they gave me my true diagnosis. Anyways, this experience made me so scared. For months and months I was afraid that it would happen again. At work I would freak out if I felt bad and I had anchored that feeling there. It was so bad for a while that i truly thought in my mind that I could die (I'm only 22, I wasn't ready for that yet!) I have always been uncomfortable putting myself first when it comes to me diet, etc. I could never talkk to my friends at length about my diet. After that episode it forced me to be totally honest with the people around me and look into new ways to heal myself. My friends know about everything now and are very accomidating. MAybe they are far and few between but they have been amazing and I have also been pretty lucky at work. The best thing for me to do when I freak out is to get the support of others. Even just someone to listen to me and not give any feedback on what I "should" do is really nice. A few other things I do are take a nap (i always feel a little more energized after a quick nap), take valerian root/kava kava/hops/st johns wort/ stress b vitamins or other anti-anxiety natural supplements. Relaxation exercises like meditating, yoga and breathing deeply help a lot too.
Also you may want to think about working with a naturopath. I am working with the naturopathic college in town and it is really cheap (only 15$ an appointment + discounted supplements)) There are natural remedies that you can take that will help your intestines and stomach heal. Some things to think about are colostrum (milk derived, but doesn't contain lactose) aloe vera gel, extra virgin coconut oil, and fish oil. I also take dgl lozenges for reflux and repairing my esophogus and stomach lining (I'm not sure if this would apply to you).
I also agree with others about pychologists. If I had the $$ I might think about going that route myself.
I hope this helps! Best of luck & you are NOT alone.
-K

[pogirl1786]

thanks for all the replies. it's very appreciated. i may go to someone just to see if there's anything that would help the anxiety. i've also found that me being okay with what happens helps. since it's all farely new to me, i would always apologize about being sick, but i should not have to apologize all the time, because it's not something i can fully control all the time. so i think realizing that it's okay to be sick has eased my mind a little. thanks again for all the replies, it's good to know that none of us are alone in all of this.

[Canadian Karen]

Hi. I know exactly how you are feeling.....

There have been about 3 or 4 times where my flare ups have been so intense and painful, that I literally thought I was going to die, that this is it, cancer has set in from years of this disease going undiagnosed.....

I can remember one particularly bad one, where I had just had my second daughter, she was about six months old, and I had a really bad flare up. I can remember sitting on the stairs crying, in pain so much, thinking, "I am never going to see my children grow up..." It is incredibly scary and this disease really does play with your mind just as much as your stomach.....

I just got through another flare up not too long ago, where those same feelings returned, (this time I now have four children, having added twin boys to the clan!)
I just had to keep on telling myself over and over again that "Hey Karen, remember this happened before, and you thought you wouldn't get through it? well, you did, and this too shall pass".......

Depression plays a big part for me also. I have battled depression since my early 20's. Currently, I am on two different anti-depressants. But the way I look at it, I take thyroid medication because my body does not produce iodine, just the way that I take anti-depressants because my brain does not produce chemicals that it should.....

Hugs to you, and just remember, you are not alone in these feelings.....

Karen

[catfish]

Having lived with the IBS-D diagnoses for so many years, I can really relate. Nowadays, all it takes is the feeling of "nature calling" to set me into a panic. I am used to it being an excrutiating, all-day ordeal just to use the restroom, so now that my symptoms have been reduced my mind is still trained to associate this with a painful ordeal. I don't know how long it will take for me to retrain my mind, and I think that the anxiety itself may prevent me from ever being rid of the symptoms enitrely. If I feel a little gas rumbling in there, my stomache tenses up and ties itself in a knot and I start to sweat just bracing for what my mind has gotten used to being the inevitable. I don't know what it means to be normal and I wouldn't recognize it if I were! Perhaps a behavioral psychologist is the answer, I don't know. I don't really have any answers but I thought I'd let you know that I can at least understand where you're coming from.

[celiac3270]

laying on the floor or bed with my knees in my stomach, and above all praying for comfort and healing.

So glad to hear that someone else copes that way. My mom always wondered and asked me why I do that whenever I'm sick....I just said that it feels better, the abdominal pains aren't as bad....I'm so glad to hear that putting knees to the stomach is not something that only I do...

-celiac3270